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Tuesday, July 31, 2012

I've been having voice problems off and on for the last few weeks - first it began breaking up (cracking, dropping out words mid-sentence), then a loss of range and clarity, and now it has become painful to talk for extended periods (like in meetings, or even sing to my beloved Journey in the car). I'm hoarse almost all the time.

I dug around and on RA Warrior I discovered that it could be vocal cord (cricoarytenoid) arthritis, a result of rheumatoid arthritis attacking the cricoarytenoid joints near your larynx.

So, how common is cricoarytenoid Rheumatoid Arthritis?
Very. Arthritis materials estimate the rate of cricoarytenoid involvement to be anywhere between 17 and 75%. No wonder people are confused. At least 35% of RA’ers complain of hoarseness, a common symptom of cricoarytenoid RA.
But wait! Post mortem studies range from 45 – 88%. I have read a couple of journal articles which find autopsy evidence of laryngeal Rheumatoid Arthritis in 87% of patients. An American College of Rheumatology report found that 7 out of 8 RA patients showed histopathologic changes postmortem. They stated, “Arthritis of the cricoarytenoid joint occurs much more frequently in patients with rheumatoid disease than has generally been suspected.”

In the last week it has felt like there is always something in my throat and surrounding neck muscles are hurting. I mostly only speak if spoken to at this point. I stay off of the phone. It's getting scary. I asked my rheumatologist about it and so she's slotting me in this week. Cricoarytenoid arthritis can impede breathing, so ignoring these symptoms isn't a good idea. But it would have been good to know that this complication existed since I just thought it was a minor annoyance until the symptoms started escalating.

The other possibility of course, is that Enbrel, the drug I take for RA, may be causing some trouble in this area. Sore throat is a listed side effect, though I didn't see anything about the feeling of something in the throat or constriction and neck pain (save a severe allergic reaction, which I haven't had; I started Enbrel in May). I won't get to see an ENT doctor until mid-August.

Between this sh*te and RA my wrists making typing painful, it looks like Mother Nature wants me to shut up, lol. That should please some folks.

Monday, July 30, 2012

Note to North Carolina elected officials and its tourism industry - this question is for you as well. Hit me up with your best case explaining why my birthday should be celebrated here on Facebook or pam at firedoglake dot com and I'll be happy to share your perspective with readers.

It's a relevant question that I'd like to hear your thoughts on because many thoughtful people here in North Carolina, who pay taxes to a state government that put the anti-gay measure on the ballot that passed this May, are wondering how they should spend their discretionary dollars and what they should tell equality-minded friends and relatives to do.

My wife Kate clued me in that some family members planned to do something nice for my 50th birthday next year (July 8). Their first thought was to rent a beach house on the Outer Banks of NC (@theouterbanks, on Facebook), a place I've had the pleasure of staying back in the day when the wild ponies were still allowed to stroll the streets of Corolla. She told me because she wanted to toss the idea around with me to consider what has transpired here politically and whether I had strong feelings one way or another about it.

The matter is more politically and emotionally complicated than it seems. North Carolina is my birth state; I moved and lived in NYC for many years and chose to come back to live here in 1989 for the quality of life and infinitely better cost of living. We happen to live in a progressive area of the state, so being out hasn't been an issue (though not having our Canadian marriage here recognized is). It is also a state with zero statewide anti-discrimination measures on the books, but it has many private companies and institutions that offer that and same-sex spousal equivalent benefits. So yes, it's complicated. Look at this map of the Amendment One results (the interactive one is at WRAL). I highlighted the counties highly dependent for revenue from vacation tourism that voted against A1:

So the only county on the beach that voted against A1 is Dare County and it barely did at that. That's not a lot of confidence about a hospitable environment for a celebration with out gay folks and allies. It's not just a matter of supporting the tourism industry here -- the issue extends to the local community. Why spend gay/ally dollars in a place where Kate and I cannot be out in the local community, enjoy local restaurants, etc. and be treated like anyone else. Would Dare County residents be aghast at the sight of us holding hands? Can major NC tourist destinations (outside of Asheville) claim LGBTs are treated as equals in those destinations?

One Facebook friend, Jon Winkleman, tried to frame consideration based on the potential positives of the Democratic National Convention being held in Charlotte.

"To that end I personally believe the answer is not for openly gay people and straight allies to isolate NC and give them less one on one exposure to LGBT people and their friends. As the DNC nor requires every state including NC to set LGBT diversity goals to not only reflect the size of NC's LGBT community but the ethnic and cultural diversity within NC's LGBT community, we may squander more good than bad by moving. Every Democratic political leader I'm NC will be seated at the convention with their LGBT neighbors. For many it will be the first time they are interacting with openly LGBT COLLEAGUES rather than special interests lobbying them from outside. It is a real insider geeky strategy but it actually works effectively at shifting how local political leaders view LGBT people."

My reply:

[M]y birthday celebration isn't the DNC, and there are many factors in any personal decisions about how one spends their money. A potential marriage equality plank in the Dem platform does nothing to advance marriage equality or employment non-discrimination in North Carolina, and nothing about that will change by my birthday on July 8 of next year. So again, does my family spend its money here? For instance, many of my friends are in NYC, my brother lives in Delaware. Both have much more to offer in terms of equality under the law. So does DC.

But back to the question and whether I've received any responses from NC institutions about it - I haven't heard from any of the above parties in the NC tourism industry as of yet from that Tweet (the state’s official travel and tourism department or the Outer Banks folks). I did get a reply from a prominent business on the Outer Banks, Jean Maynard of Village Realty OBX (@VillageRealty), who gave me permission to post her email.

Hi Pam, this is Jeannie at Village Realty on the Outer Banks of NC. You had posted a question about coming in for your 50th (really? You don't look 50 at all..) birthday next year. I assure you that your family would be welcome and I did post a reply. We are very welcoming to all people...and there are many gay people who live and work here year 'round. I will be very happy to answer any questions or concerns you have and I do understand your concerns... Thank you for your interest and I hope I can convince you that Dare Country is a good place to vacation. And we did NOT like it that that amendment passed--one of the few counties that did not vote w the rest of the state.

...One of my sisters is gay...and a minister (I call her a Lesbitarian! with love) and I have many gay friends, my daughters brother in law is gay and married, my husband is a musician and we have lots of friends who happen to be gay. Frankly, I don't what 2 people (or more) do as long as they don't mess with kids and all are consenting adults. There are a lot more things to worry about in this world than who loves who. Love is love. Feel free to use my words...and I hope I get the opportunity to meet with you one day. Our island is so beautiful and laid back...I brought my daughters up here and they love it too.

It is a magical place...

Have a most wonderful day

That's one compelling argument - not to hurt local businesses run by people who are supportive. But does doing so bring equality to NC any faster? Is it more important to be out and proud in the state than withholding discretionary income in a boycott? Maybe, maybe not. In a realistic view, nothing about anti-gay discrimination will occur in NC legislatively; our lawmakers are for the most part cowardly. Even a good number of the Republicans are agnostic on these matters and are simply swayed by their bible-beating bigoted constituents to hold on to their seats. They are content to wait for the federal government and the Supreme Court to eventually take the decisions out of their hands.

So -- if I don't hold my 50th birthday fete in NC, where do you think I should? Other considerations are below the fold.

Some politically hospitable choices that immediately come to mind: New York, DC, Maine, Delaware, Massachusetts, Connecticut, Vermont. Big downsides for these Blue states -- the cost of planning a vacation there can be prohibitively expensive, and I don't want to send my family to the poorhouse on my account. By that standard, NC provides much more bang for the buck.

And to throw another wrench in the works, how about whether the place is keen on interracial couples or TEH BLACK for that matter. You sadly still can't take that for granted in 2012.

What do you think? I hope that people chime in with their thoughts about what they would do, given we also have 30 states with anti-gay "marriage" amendments. If you're going to boycott one state, then one should be consistent and boycott ALL.

***

Other matters to consider from my perspective that have nothing to do with politics when considering a locale:

Ease of travel access: With my rheumatoid arthritis, air travel is literally a pain, and I'm not good for driving long distances any more, so taking planes with multiple connections takes a toll. From the perspective of guests, expense of travel to and from the venue should be easy too. (Note: the Outer Banks is a real haul by car from RDU, a big demerit).

Expense: As I mentioned above, I don't want my loved ones going broke on my account trying to foot the bill for a beach or spa vacation for my 50th. All the most LGBT-friendly states are not surprisingly much more expensive.

The local environment: public transportation is good if I'm not going to end up at the beach (where that's usually not available). Or easy ability to find fun restaurants to sample local specialties -- btw, I had a great time in Maine in 2010, thanks to my friend Joe Sudbay, who celebrated his 50th there with family and friends.

I want to relax: In the end I'll just be happy to make it to 50 (cross fingers) considering my broken body. I have no need to party hard, and don't want to spend a lot of time walking around on painful feet all the time, so an adventure trip is out. Some spa pampering would be most excellent. Beach would be nice, but not essential. I haven't had a real vacation that wasn't about blogging or a perfunctory family trip that is way too short to see all the people I would like to see (that's just about every NYC trip!).

Wednesday, July 25, 2012

Rheumatoid Arthritis diary entry 7/25/2012
The three or so days a week of good joint pain relief that the weekly-injected biological drug Enbrel has given me comes at a pretty steep price -- 2 days of fatigue, chills and stiffness after the injection. It's almost worth it for those three good days, but losing my weekends to the side effects is getting old fast. It makes travel or doing activities I like during that non-work time limited.

But it's essential so I can actually hold down a job and have that health insurance.
All that said, yesterday I did find out the limits of the efficacy of Enbrel and those "good days". I figured that my body could handle a long work day involving a lot of heavy lifting, I was wrong. A vendor come to town and had to get refreshments and stuff for the duration of the day-long demo, so on Monday PM I bought water, sodas and some other refreshments that I lugged to the car, put them in the fridge, then got up really early on Tuesday, lugged it all back into the car and then drove it all to work, where I unloaded it and got the crap upstairs and into the fridge there, made the coffee and got it all ready for the out-of-towners.

And the day went well, took notes all day (wrists all wrapped up in ace bandages, as usual, since those joints seem not to benefit from the Enbrel and are starting to deform), got everything cleaned up.

By the end of the day I was feeling it. limping and starting to hurt. My daytime meds were wearing off as well.

Then the fun began overnight. My feet and legs swelled up; the edema hurt like hell and all of the joints in my feet were on fire and screaming. So here I am in bed with my legs up, hands wrapped (I had to sleep that way for part of the night).

I guess pushing my luck with the fantasy that Enbrel's magical powers trump overdoing it when you have RA is a pointless exercise, and a good lesson in forced acceptance. But you have to hit the f*cking wall to realize just what you can and cannot do any more. So yes, I can still lift heavy crap and work long hours on little sleep, but then my RA-crippled body supercedes any pharmaceutical intervention to tell me "you fcked up."

But it wasn't all bad news this week. I went to the endocrinologist for a regular visit (I have had insulin-dependent diabetes for over 30 years now), and for the first time in decades, my A1C, or measure of how well your diabetes is being controlled over a six to 12 week period, hit an amazing target - 6.7. An explanation :

For people without diabetes, the normal range for the hemoglobin A1c test is between 4% and 5.6%. Hemoglobin A1c levels between 5.7% and 6.4% indicate increased risk of diabetes, and levels of 6.5% or higher indicate diabetes. Because studies have repeatedly shown that out-of-control diabetes results in complications from the disease, the goal for people with diabetes is a hemoglobin A1c less than 7%.

The thing is, no matter how I altered my diet or exercise regimen over the years, I was not able to get it down in the 7.0 range. And certainly in the last few months, even on Enbrel, my physical activity level is much lower than prior to 2008, when I was able to do walking regularly pain free. What has been consistent over the last few years is that the chronic pain and inflammation has made my blood sugars run much higher than normal, and as a result, I would have to take more insulin, but even so that A1C number would not go down. I did hit 7.9, which was a pretty big victory from my POV last time the test was run.

And then I started the Enbrel in May. I have other explanation for the drop in the A1C to 6.7. My guess is that this biologic drug, which suppresses your immune system in order to reduce the inflammation of rheumatoid arthritis (the disease attacks and deforms/destroys your joints), is reducing the pain levels and general inflammation that has kept my blood glucose high despite no radical changes to my diet or exercise regimen during the last few months.

Again this shows just how systemic auto-immune diseases affect other systemic conditions; the chemical hormonal soup inside our bodies that goes haywire to produce all of these ailments is complex. That the complexity also involves problems that are invisible to others is a whole other matter. People assume because you look "fine" outside think all is well. In fact, those of us who still struggle with acceptance of physical limitations that come from within due to the nature of these illnesses, ones that don't manifest themselves as easily identifiable as a broken leg or use of a wheelchair (yet) obviously give us a chance from time to time to go into denial. And then you hit the wall.

It's doubly problematic if you're like me, stubbornly self-reliant, rarely asking for help. You're talking about someone who drove herself to the ER twice while having a kidney stone attack (that pain is a 10 out 10 on my personal pain scale). Stupidly self-reliant. I'm doing better on that front these days, so I don't do anything that extreme, but clearly I've got a ways to go after what happened this week.

But I'm sure that I'll have to hit that wall of denial and pain repeatedly to learn about the body I have today, rather than the one I used to rely on.

Thursday, July 19, 2012

Too late, Chick-Fil-A, the blowback begins. You donate to anti-gay causes, and believe in a biblical business model that does in fact discriminate against marriage equality. Perhaps its leadership forgot all of the states where gay and lesbian couples are indeed legally married. And a lot of homos (and allies) will keep their green dollars out of your establishments. From its Facebook post, trying some damage control:

The Chick-fil-A culture and service tradition in our restaurants is to treat every person with honor, dignity and respect – regardless of their belief, race, creed, sexual orientation or gender. We will continue this tradition in the over 1,600 Restaurants run by independent Owner/Operators. Going forward, our intent is to leave the policy debate over same-sex marriage to the government and political arena.

Chick-fil-A is a family-owned and family-led company serving the communities in which it operates. From the day Truett Cathy started the company, he began applying biblically-based principles to managing his business. For example, we believe that closing on Sundays, operating debt-free and devoting a percentage of our profits back to our communities are what make us a stronger company and Chick-fil-A family.

Our mission is simple: to serve great food, provide genuine hospitality and have a positive influence on all who come in contact with Chick-fil-A.

Try seeing how Chick-Fil-A is leaving "the policy debate over same-sex marriage to the government and political arena" after what Chick-fil-A President Dan Cathy told Baptist Press:

“Well, guilty as charged,” he said in the interview when asked about Chick-fil-A’s backing of families led by a man and a woman.

“We are a family-owned business, a family-led business, and we are married to our first wives,” Cathy said.

The chain, according to the report, has 1,608 restaurants, sales of more than $4 billion and employees who are trained “to focus on values rooted in the Bible.” Chick-fil-A's across the country shut down on Sundays.

“We don’t claim to be a Christian business," Cathy said. "But as an organization we can operate on biblical principles.”

Last year, protesters accused Chick-fil-A of supporting an anti-gay agenda with donations, which the company has steadily denied. The company could not immediately be reached for comment Wednesday.

A report from LGBT advocacy group Equality Matters concluded that Chick-fil-A donated more than $3 million between 2003 and 2009 to Christian groups that oppose homosexuality. In 2010 alone, the company gave nearly $2 million to such causes, according to the report.

WinShape Is Chick-Fil-A’s Charitable Arm. The WinShape Foundation is Chick-fil-A’s charitable arm, created by Chick-fil-A founder and chairman S. Truett Cathy in 1984. WinShape has received a substantial amount of funding from Chick-fil-A: in 2009 alone, WinShape received $7,814,788 from Chick-fil-A Inc. [Winshape 2009 Publicly Available IRS 990 Form via Foundation Center, accessed10/28/11]

WinShape Gave Over $1.7 Million To Anti-Gay Groups. In 2009 alone, WinShape donated $1,733,699 to multiple anti-gay groups:

Chick-fil-A is one of a very small number of major national companies that refuses to offer any employment protections to LGBT employees. In fact, the company received a 0 rating from the Human Rights Campaign and has a record of firing employees it believes engage in “sinful” behavior. This is hardly a tradition of treating everyone “with honor, dignity, and respect.”

Oh sh*t. This man can give an entire nation PTSD. He just doesn't get how he f'd it all up - the sociopath just had a kick-@ss time in power. And here we are, picking up the pieces from his eight years of terror. (HuffPo):

George W. Bush finds life as a former president just fine and dandy.
"Eight years was awesome, and I was famous and I was powerful. But I have no desire for fame and power anymore," he said in a new interview with the Hoover Institute's Peter Robinson.
The former president is promoting a book on economic growth -- "The 4 Percent Solution: Unleashing the Economic Growth America Needs" -- put out by the George W. Bush Institute.

Monday, July 16, 2012

The flaming pile of #FAIL that is the Romney campaign of the last week is a gift that keeps on giving. The pathological lies excuses about his days at Bain from 1999-2002 are mind-boggling, and fooling no one. And the call for his tax returns to be released grows from people in his own party. Of course the only possible reason for this prolonged PR disaster is that whatever is in those returns has to be worse than Mittens looking like a phantom CEO, a lying CEO, or well, stupid. CNN tonight just got to the bottom line. An actual graphic that aired (via Americablog):

Who ran Bain? For that matter, where are the Board minutes supporting Ed Gillespie’s claim that Romney ‘retroactively retired‘ in 2002, effective 1999? Board minutes must support this contention, right? And they also must support all Romney’s other contradictory contentions regarding his tenure, I would imagine. For instance, the purchase of the abortion-profiteer company that burned up dead babies: that profitable enterprise’s absorption into the Bain borg must be approved somewhere. The Board must have approved Romney’s request for a part-time leave of absence. Whose signatures are on those papers? Was the Board vote unanimous approving these actions by Romney? If Bain wants their man Mitt in the White House, if Wall Street has decided the non-prosecutorial bent of Team Obama isn’t fealty enough, if the Masters of the Universe want one of their own in the Oval, they can produce these documents and clarify everything.

Speaking of the Olympics, it appears the 2012 Romneybot model has fooled his campaign into believing that he’s the job creator, the believer in the market forces pumping the economy, and evangelist in the belief that government is the problem, not the solution. It did not inform the campaign about Romneybot 2002 model’s propensity for sucking at the teat of the U.S. taxpayer — and bragging about it on video. After talking to the NAACP about all the freeloaders lovin’ Obamacare last week, watch the then-governor of Massachusetts go after every dime he could get from the federal government for his state and the Olympics. This was obtained by ABC News, a video shot undercover by a Dem opponent: